Dying in America


Book Description

For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life. Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes. Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.




Approaching Death


Book Description

When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an "overtreated" dying is feared, untreated pain or emotional abandonment are equally frightening. Approaching Death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decisionmakers that address specific barriers to achieving good care. This volume offers a profile of when, where, and how Americans die. It examines the dimensions of caring at the end of life: Determining diagnosis and prognosis and communicating these to patient and family. Establishing clinical and personal goals. Matching physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances. Approaching Death considers the dying experience in hospitals, nursing homes, and other settings and the role of interdisciplinary teams and managed care. It offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues such as assisted suicide. The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done."




Sedation at the End-of-life: An Interdisciplinary Approach


Book Description

The book’s main contribution is its interdisciplinary approach to the issue of sedation at the end-of-life. Because it occurs at the end of life, palliative sedation raises a number of important ethical and legal questions, including whether it is a covert form of euthanasia and for what purposes it may legally be used. Many of the book chapters address the first question and almost all deal with a specific form of the second: whether palliative sedation should be used for those experiencing “existential suffering”? This raises the question of what existential suffering is, a topic that is also discussed in the book. The different chapters address these issues from the perspectives of the relevant disciplines: Palliative Medicine, Bioethics, Law and Theology. Hence, helpful accounts of the clinical and historical background for this issue are provided and the importance of drawing accurate ethical and legal distinctions is stressed throughout the whole book. So the volume represents a valuable contribution to the emerging literature on this topic and should be helpful across a broad spectrum of readers: philosophers, theologians and physicians.




Values at the End of Life


Book Description

This insightful study examines the deeply personal and heart-wrenching tensions among financial considerations, emotional attachments, and moral arguments that motivate end-of-life decisions. America’s health care system was built on the principle that life should be prolonged whenever possible, regardless of the costs. This commitment has often meant that patients spend their last days suffering from heroic interventions that extend their life by only weeks or months. Increasingly, this approach to end-of-life care is coming under scrutiny, from a moral as well as a financial perspective. Sociologist Roi Livne documents the rise and effectiveness of hospice and palliative care, and growing acceptance of the idea that a life consumed by suffering may not be worth living. Values at the End of Life combines an in-depth historical analysis with an extensive study conducted in three hospitals, where Livne observed terminally ill patients, their families, and caregivers negotiating treatment. Livne describes the ambivalent, conflicted moments when people articulate and act on their moral intuitions about dying. Interviews with medical staff allowed him to isolate the strategies clinicians use to help families understand their options. As Livne discovered, clinicians are advancing the idea that invasive, expensive hospital procedures often compound a patient’s suffering. Affluent, educated families were more readily persuaded by this moral calculus than those of less means. Once defiant of death—or even in denial—many American families and professionals in the health care system are beginning to embrace the notion that less treatment in the end may be better treatment.




Dying Well


Book Description

From Ira Byock, prominent palliative care physician and expert in end of life decisions, a lesson in Dying Well. Nobody should have to die in pain. Nobody should have to die alone. This is Ira Byock's dream, and he is dedicating his life to making it come true. Dying Well brings us to the homes and bedsides of families with whom Dr. Byock has worked, telling stories of love and reconciliation in the face of tragedy, pain, medical drama, and conflict. Through the true stories of patients, he shows us that a lot of important emotional work can be accomplished in the final months, weeks, and even days of life. It is a companion for families, showing them how to deal with doctors, how to talk to loved ones—and how to make the end of life as meaningful and enriching as the beginning. Ira Byock is also the author of The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life.




Caring for the Dying


Book Description

Caring for the Dying describes a whole new way to approach death and dying. It explores how the dying and their families can bring deep meaning and great comfort to the care given at the end of a life. Created by Henry Fersko-Weiss, the end-of-life doula model is adapted from the work of birth doulas and helps the dying to find meaning in their life, express that meaning in powerful and beautiful legacies, and plan for the final days. The approach calls for around-the-clock vigil care, so the dying person and their family have the emotional and spiritual support they need along with guidance on signs and symptoms of dying. It also covers the work of reprocessing a death with the family afterward and the early work of grieving. Emphasis is placed on the space around the dying person and encourages the use of touch, guided imagery, and ritual during the dying process. Throughout the book Fersko-Weiss tells amazing and encouraging stories of the people he has cared for, as well as stories that come from doulas he has trained and worked with over the years. What is unique about this book is the well-conceived and thorough approach it describes to working skillfully with the dying. The guidance provided can help a dying person, their family, and caregivers to transform the dying experience from one of fear and despair into one that is uplifting and even life affirming. You will see death in a new light and gain a different perspective on how to help the dying. It may even change the way you live your life right now.




Top Five Regrets of the Dying


Book Description

Revised edition of the best-selling memoir that has been read by over a million people worldwide with translations in 29 languages. After too many years of unfulfilling work, Bronnie Ware began searching for a job with heart. Despite having no formal qualifications or previous experience in the field, she found herself working in palliative care. During the time she spent tending to those who were dying, Bronnie's life was transformed. Later, she wrote an Internet blog post, outlining the most common regrets that the people she had cared for had expressed. The post gained so much momentum that it was viewed by more than three million readers worldwide in its first year. At the request of many, Bronnie subsequently wrote a book, The Top Five Regrets of the Dying, to share her story. Bronnie has had a colourful and diverse life. By applying the lessons of those nearing their death to her own life, she developed an understanding that it is possible for everyone, if we make the right choices, to die with peace of mind. In this revised edition of the best-selling memoir that has been read by over a million people worldwide, with translations in 29 languages, Bronnie expresses how significant these regrets are and how we can positively address these issues while we still have the time. The Top Five Regrets of the Dying gives hope for a better world. It is a courageous, life-changing book that will leave you feeling more compassionate and inspired to live the life you are truly here to live.




Approaching the End of Life


Book Description

In her more than forty years as a minister, Rev. Donna Schaper has been approached hundreds of times by people wanting to know how to prepare for the end of life in both practical and spiritual matters. Countless others have turned to her for guidance on how to handle the death of a loved one. From making a will and planning a memorial service to finding peace in the toughest circumstances, Approaching the End of Life offers practical and spiritual guidance to anyone wrestling with the end of a life. With sensitivity and humor Rev. Schaper helps readers face aging and mortality with freedom rather than fear. She encourages readers to find a spiritual home of some kind—even if it is far from the doors of a church—and offers helpful suggestions on memorials and funeral services that will be well suited to the departed while serving the loved ones in their grief and celebration. The book also includes practical resources such as a service planning checklist, a template for a funeral or memorial service, and more.




Textbook of Palliative Care


Book Description

This second edition provides the most up-to-date information on all aspects of palliative care including recent developments (including COVID-19), global policies, service provision, symptom management, professional aspects, organization of services, palliative care for specific populations, palliative care emergencies, ethical issues in palliative care, research in palliative care, public health approaches and financial aspects of care. This new Textbook of Palliative Care remains a unique, comprehensive, clinically relevant and state-of-the art book, aimed at advancing palliative care as a science, a clinical practice and as an art. Palliative care has been part of healthcare for over fifty years but we still needs to be explained. Healthcare education and training has been slow to recognize the vital importance of ensuring that all practitioners have a good understanding of what is involved in the care of people with serious or advanced illnesses and theirfamilies. However, the science of palliative care is advancing and this new edition will contribute to a better understanding of this specialty. This new edition offers 20 new chapters out of over 120, written by experts in their given fields provide up-to-date information on a wide range of topics of relevance to those providing care towards the end of life no matter what the disease may be. We present a global perspective on contemporary and classic issues in palliative care with authors from a wide range of disciplines involved in this essential aspect of care. The Textbook includes sections addressing aspects such as symptom management and care provision, organization of care in different settings, care in specific disease groups, palliative care emergencies, ethics, public health approaches and research in palliative care. This new Textbook will be of value to practitioners in all disciplines and professions where the care of people approaching death is important, specialists as well as non-specialists, in any setting where people with serious advanced illnesses are residing. It is also an important resource for researchers, policy-and decision-makers at national or regional levels. Neither the science nor the art of palliative care will stand still so the Editors and contributors from all over the world aim to keep this Textbook updated so that the reader can find new evidence and approaches to care.




The Art of Dying Well


Book Description

This “comforting…thoughtful” (The Washington Post) guide to maintaining a high quality of life—from resilient old age to the first inklings of a serious illness to the final breath—by the New York Times bestselling author of Knocking on Heaven’s Door is a “roadmap to the end that combines medical, practical, and spiritual guidance” (The Boston Globe). “A common sense path to define what a ‘good’ death looks like” (USA TODAY), The Art of Dying Well is about living as well as possible for as long as possible and adapting successfully to change. Packed with extraordinarily helpful insights and inspiring true stories, award-winning journalist Katy Butler shows how to thrive in later life (even when coping with a chronic medical condition), how to get the best from our health system, and how to make your own “good death” more likely. Butler explains how to successfully age in place, why to pick a younger doctor and how to have an honest conversation with them, when not to call 911, and how to make your death a sacred rite of passage rather than a medical event. This handbook of preparations—practical, communal, physical, and spiritual—will help you make the most of your remaining time, be it decades, years, or months. Based on Butler’s experience caring for aging parents, and hundreds of interviews with people who have successfully navigated our fragmented health system and helped their loved ones have good deaths, The Art of Dying Well also draws on the expertise of national leaders in family medicine, palliative care, geriatrics, oncology, and hospice. This “empowering guide clearly outlines the steps necessary to prepare for a beautiful death without fear” (Shelf Awareness).